I write as an outlet, as two of our children battle cancer, positive for Li-Fraumeni Syndrome. I cannot say how often I have heard the phrase, "I cannot even imagine..." but hope to give a glimpse of what this is like...and to reassure you that it is not all bad, despite the challenges.

Monday, April 27, 2015

Breadcrumbs

I have come here to write a couple of times over the past weeks. I have gently closed my computer each time, leaving a blank screen. It is hard to know what to say.

Our days have been frenzied, with tremendous highs and crushing lows. Sometimes, these fantastic swings happen all within the same day. We toured the White House a couple of weeks ago, even getting photos with the Obama's dogs Sunny and Bo, which was such a treat for the kids. Hours later, we learned that Brent had progressed from MDS to AML, which would require additional rounds of chemotherapy prior to transplant.

It has been a bipolar existence of late.

I have prayed for breadcrumbs, which I define as bits of encouraging news, like finding a full sibling perfect match. I could not be more grateful for these blessings, but find that my hunger nowadays is fairly insatiable. I no sooner get one bit of encouragement, then I turn around and ask for another. I am currently asking for disease regression, a beat down of the leukemia from the two weeks of chemo that Brent just completed. This would certainly bolster our spirits as Brent heads into bone marrow transplant.

I pray for breadcrumbs of guidance as well, to help us find our way out of this place. God and I have an understanding, you see. I readily admit that am not particularly bright, so if there is something that I am supposed to do, he needs to make it perfectly obvious and drop it right in front of me-to trip over. I feel like I have received some of these sorts of breadcrumbs.

As an example, my daughter was recently found to have some tumor regrowth and will require brain surgery again this summer. (This would be one of those crushing lows that I was talking about.) But, I will have the opportunity to speak with researchers who specialize in hereditary brain tumors in a couple of weeks when they gather at Ohio State. I am comforted with this breadcrumb of sorts. I have some peace knowing that I am doing the things that I can, the things that I am supposed to do.

We wait in hospital for count recovery, and there is a stillness. I do not struggle, being forced unwillingly into the present moment. I find that I am just here.

My faith may be rather unorthodox, but love is universal, overflowing and unending.

About Me

Our pediatric cancer adventure was complicated by the discovery of a genetic mutation (Li-Fraumeni Syndrome) which predisposes two of my children to all forms of cancer. While Brent, now 16, battled osteosarcoma (bone cancer), we found that Lauren, now 13, had a rare brain tumor. Since our initial problems in 2011, Brent developed two subsequent cancers (Metastatic melanoma and AML--a leukemia that required bone marrow transplant) and Lauren had a second brain tumor removed.

I share both the challenges and the blessings of this life, pretty freely.